Research in severe brain injury
is challenging because subjects may be unable to provide informed
consent and interventions may alter cognition, memory or affect.
This may alter the self and raise fundamental questions about
personhood. I will consider these challenges through the prism
of the philosopher, Derek Parfit's work on personal identity.
Specifically, I will consider narrative and personal continuity
before and after injury and how this should inform our ethical
obligations to individuals with severe impairments of consciousness
following brain injury. Arguing for narrative and personal continuity,
I will reconsider prevailing ethical stances and regulatory norms
concerning research on subjects who may lack decision making capacity
and suggest novel strategies to engage surrogates. I will assert
that our response to research regulation should be cognizant of
the connection between the subject's past and current states and
the long history of societal neglect sustained by this under-served
segment of our population.
Selected references:
Fins JJ. From psychosurgery to neuromodulation and palliation:
history's lessons for the ethical conduct and regulation of neuropsychiatric
research. Neurosurg Clin N Am. 2003 Apr;14(2):303-19
Fins JJ. Constructing an ethical stereotaxy for severe brain injury:
balancing risks, benefits and access. Nat Rev Neurosci. 2003 Apr;4(4):323-7
Fins JJ. A proposed ethical framework for interventional cognitive
neuroscience: a consideration of deep brain stimulation in impaired
consciousness. Neurol Res. 2000 Apr;22(3):273-8